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Yes, Migraine IS a Disability

Migraine disease is one of the 20 most disabling medical illnesses in the world and the 12th most disabling disorder in the United States. More than 90% of migraine suffers can’t function normally during an attack, and the World Health Organization has stated that severe migraine attacks are as disabling as quadriplegia. (For more migraine statistics, click here.)

Why then are we, who suffer from the disease, so often reluctant to acknowledge migraine disease as a disability?

For me, the answer is deceptively clear: I don’t want to be disabled.

The stigma of disability

In the United States, disability carries stigma, especially when the disease is something no one can see (i.e. invisible illness). People who are bedridden or housebound from illnesses like migraine, fibromyalgia, depression, or chronic fatigue syndrome are often considered lazy, flaky, or simply “less than.” If I’m honest, though, my reluctance to acknowledge my disability stems more from my own feelings of uselessness than from any external judgment.

Migraine impacting all aspects of life

I hate when I can’t work a full day, clean the house, take care of my children, and/or attend a friend’s special event. I can’t stand when my migraines are bad enough I begin to fear making plans in advance because I know I’ll have to cancel them when the next attack hits. I loathe even one day of being curled up in the dark, unable to live my life as I’d like.

To admit disability, then, means admitting that this isn’t a one-off event. That days like this – when I feel like so much less than the woman I know I am – will happen again. And again. And again.

Being sick indefinitely with no migraine cure

It means admitting that I can’t go to graduate school or law school like I’d once dreamed, because I can’t realistically commit to such an intense level of work on a long-term basis. It means acknowledging that my career options are limited by my environment (any job under fluorescent lights in which I stand on my feet for hours on end, for example, is out). It means admitting that I will be “like this,” sick, indefinitely.

This is what I am most reluctant to admit: the continuity of my disease.

There is no cure for migraine disease, at least not yet. And, though my migraines do get better, they also get worse. Some months, I may have only a couple per week. Other months, depending on the weather, I’m bedridden nearly every night. My disease changes, but it is always present.

Practicing self-care

Thankfully, I have arranged my life in such a way that the disabling impact of migraine disease is easier for me to handle than it is for others. I work for myself, homeschool my children, and live in the country. If I don’t feel well enough to meet an obligation today, there’s always tomorrow. I practice good self-care and I stay as prepared as I can for the bad days. But those bad days, inevitably, come. And, when they pile up, day after day, week after week, I am forced to remember the one thing I’d prefer to forget: I’m sick.

Migraine disability assessment

I imagine other migraineurs may feel the same. (Fellow Migraine.com author Kerrie Smyres has posted on this very thing.) If you’re one of them, consider taking a look at the MIDAS (Migraine Disability Assessment) questionnaire to see how migraine disability is calculated – the results may surprise you. (Chronic migraineuers, however, may want to check out the Headache Impact Test instead. Also, if you are one of the many chronic migraineurs who is unable to work at all, click here for tips on how to apply for Social Security Disability.) Acknowledging the reality of your disease and/or receiving objective verification that you are truly, disabling, sick (if you are) can be a life-changing event.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • bookseller
    2 days ago

    @StormKat. It is very common to be denied the first time around. I hired a lawyer and got approved the second time. His fees came out of the back pay. SSI will pay your monthly stipend retroactive to when you first applied.

  • StormKat
    2 days ago

    I FINALLY applied for disability with chronic migraine and was denied. Absolutely ridiculous. I have in excess of 23 migraine days per month and am anaphylactic to medications normally offered for migraines. I’ve seen rheumatologists, immunologists I am convinced my primary care through me under the bus somehow. I need to see what she indeed said to SSA.

  • Tracy_O
    2 weeks ago

    Before I was diagnosed with chronic migraines I two neuropsychologists diagnosed me with a much more serious condition. Because of this diagnosis it was easy to get on disability. However now there is disagreement about the diagnosis so now it’s back to chro

  • Tracy_O
    2 weeks ago

    All I know now is that I am so thankful for disability! I no longer have to explain to my bosses that really, I can’t see now!

  • Sunflower63
    1 month ago

    Hi! I am 56 years old and after 5 years of trying, I was just denied Social Security Disability here in Pa for my chronic migraines! I’m so upset about it! I get awful migraines with all the side effects approximately 25 days a month, every month. This has gone on for the last 6 years. I had an attorney representing me and was still denied. He was not experienced in migraine cases and that was a downfall unfortunately. We did appeal the decision. I had 2 Neurologists that I see, both from the biggest hospital in the Lehigh Valley write letters for me, stating that I cannot work with my chronic migraines. I can not be dependable, and all the other reasons why. The judge basically called me a liar…she said my testimony was not reliable and that patients often persuade their doctors to write letters such as I had included in my documents. Everything over the last 5 years was documented, to include my daily migraine journals, every dr visit, test, therapy, medication, injections, etc. I’m just so angry about not being believed and wish these people could live just one day in our shoes! Does anyone have any suggestions for me!?

  • AZReynolds
    3 months ago

    I get so mad when I hear stories like this, or why can’t you work through your migraine like I do! Then you find out that Excedrin helps their head! I just want to slap em! I worked through most days with migraine for 15 years, but I was taking triptans and oxycodone or tramadol, whatever I had to push through. None the less, I used up a month of vacation days, plus 12 sick days every year. I only kept my job because I was the hardest worker they had…when I was there. Yet a new boss forced me out in a matter of months after giving them 22+ years of dedication. Luckily my PCP had been begging me to try for disability for decades because of the migraine, Fibromyalgia, arthritis and scoliosis so he was on board and wrote that I will never get better or be able to work again. I was accepted after first application. However, I told them everything I could think of! I wrote tiny and gave so many details that caused me to write in between lines and up into the margins. Also my hubby knew that every single space had to be filled out even if it was N/A for not applicable. Don’t give up though!! Keeping applying because my neighbor was finally approved after 10 years of denials. She’d had 3 strokes and was denied!! Good luck!

  • Peggy Artman moderator
    3 months ago

    AZReynolds,
    Thank you for reaching out. You are not alone here. I’m glad you were approved for disability. It sounds like you were a very hard worker in spite of multiple health issues.

    I don’t think this author meant anything demeaning or stigmatizing when she wrote this article. It sounds like she was writing about her way of coping with her disease. Not everyone has the options that she has available. It’s OK to be on disability.

    I hope this helps.
    Peggy (Migraine.com Team)

  • moneypenni
    3 months ago

    Thank you! You said this so well. Now I just need to get better at the self care.

  • Peggy Artman moderator
    3 months ago

    moneypenni, I am glad this article resonated with you.
    Peggy (Migraine.com Team)

  • Nagrom
    4 months ago

    I just learned that the federal government classifies migraines as a schedule A disability. This allows me ( an others) to apply for jobs under schedule A. For me this is a game changer. It opens up many more federal jobs to me that were previously advertised as inner agency only, but yes open to disabled applicants. All it takes is a letter from your physician. You can imagine my surprise when I went to my headache clinic neurologist yesterday and she refused to write the letter because it includes the word disability. I suffer from chronic migraines but she says that migraines are “not a disability” and that viewing them this way is not helpful. She says in fact it is has been shown ( I am not sure what literature she is referring to) that accepting migraines as a disability hinders your recovery and prevents your from dealing with and handling your migraines. Needless to say I was upset on several levels. This is a doctor who specializes in migraine treatment, but apparently doesn’t find them disabling. I have gone to my primary care doctor for the letter and I will be finding a new neurologist.

  • skeebunny1
    6 months ago

    I just got approved for disability for chronic migraine & severe fibro (among other things) after a 2 1/2 year fight. I lost my job because of my health (but live in a state w/ “at will” employment laws). I know that I’m lucky that I had a great lawyer & documentation from my migraine Dr to back me up. It’s still so incredibly isolating, just being at home now & having friends who don’t understand at all. Thanks for the article.

  • kjbutler64
    4 months ago

    I just got a favorable decision after a 2 year battle for disability as well. I have intractable migraines and fibromyalgia along with other things also. I was let go from my job 2 years ago and finally gave in to apply with the help of a local paralegal. Without her help and good medical documentation I don’t think I would have been successful. Suffering with chronic pain and migraine is a long lonely road, and it is good to know we are not alone in this battle. Thanks for your comments.

  • Peggy Artman moderator
    4 months ago

    @kjbutler64, congratulations on your good news about finally getting disability. I hope this takes some pressure off of you. You are always welcome to come back here to share more of your journey. ~ Peggy (Migraine.com Team.

  • DonnaFA moderator
    4 months ago

    So glad to hear your wonderful news, @kjbutler64! Thanks for sharing a little bit about your journey. I’ve heard other members share that documentation is key. -Warmly, Donna (Migraine.com team)

  • Ponder62
    6 months ago

    I live in Ontario, Canada and because we have a fairly decent RRSP saved up, They expect us to spend it first! I can’t the government coverage for drugs or the disability tax credit either. I know a pair of drug addicts who are in and out of jail and yet they get disability. What’s wrong with this picture??!!

  • Hottiepants33
    7 months ago

    Okay so I’m actually crying right now. I feel so alone with this. The making plans in advance…I’m not the only one. I never know how to explain that. My father always tells me I didn’t used to be like this and he’s right and I feel so broken and people can’t see so they don’t understand. Everyone migraines differently and I feel like I’m so incompetent. I’m on disability not specific to migraines but for a while I was at least able to write. Now I can’t stick to a deadline. It feels so isolating. I just feel so heard after reading this.

  • Sarah Hackley moderator author
    7 months ago

    I am so sorry to hear you are struggling, but I am glad to hear this article resonated with you. We are not alone in feeling this way. I, too, have been having difficulty making plans recently and sticking to writing deadlines. It happens to us all at some point. Finding others who understand and support us is exactly what this community is about. Thank you for letting me know that this helped you. It helps me feel less alone, too. Hoping you experience some good days ahead.

  • Holly Harding Baddour moderator
    7 months ago

    I’m so glad this article resonated with you, @hottiepants33.

    You are NOT alone. Migraine is a deeply challenging and comprehensively demanding disease. It is also incredibly common, but because it is invisible, we often feel like we’re the only ones who have it. I often wish there were some physical identifier so that we could connect with each other in the real world. There are over 36 million of us in the U.S alone but for most of us, we are the only people we know in real life who have it as bad as we do. So, until we come up with some kind of “I have migraine” baseball hat, we’ll have to keep coming here to remind ourselves that the community is huge, supportive, and available anytime.

    Thinking of you.

  • Wandathurber
    11 months ago

    U need to get a lawyer. Most don’t get paid ’till u win. If u win, they take about 30% of your back pay, Wich starts from they day u file .

  • MimiRamone
    11 months ago

    I’m on medical leave & denied paid disability. Now working with a slimy lawyer to appeal, yet another headache. One thing I don’t see covered March is when you miss critical doctor appointments (for migraine), because of your migraine…the uphill battle of combining The grief and acceptance that you have a disability in your old life is gone while trying to constantly prove that you were disabled when everybody seems to be pointing at you telling you you’re fibbing and if you only tried this or tried that you’d be better… It’s also includes headache specialists and neurologists The grief and acceptance that you have a disability, your old life is shady memory, all while trying to constantly prove that you’re disabled and can’t just “push through@…when everybody seems to be pointing at you & telling you you’re fibbing with insinuating comments like, “if you only tried this or tried that you’d be better”…I hear this from headache specialists and neurologists also. Once they run out of their bag of tricks it’s the patients fault. God for bid you cry and frustration and they send you to the psychiatrist who wants to put you on more meds with more side effects and then you need more new meds to counteract those side effects…& if you try to resist they suggest some sort of treatment regime requiring more medical appointments. With each new appointment the probability of a late cancel rises, leaving you to rise from the wake with a pile of reschedules & apologetic notes begging forgiveness for late fees.
    I’m going to have to sell my home and move in with my family at 47… It is atrocious how unrecognized migraine disability is.

  • greeneyednanny
    1 year ago

    I had no idea one could now get disability for migraines. Last year I checked the Social Security site and migraines were not on the list of ‘acceptable’ conditions. I’m retired and collect SS now, but this would’ve been a big help when I had to stop working at 46 due to the migraines. I’m happy for those who have been able to get the needed disability.

  • kimmersutphin
    2 years ago

    I got lucky and was able to get disability and then like the couple of months I had so much paperwork and miss so much work and was on FMLA and just could not make it to work they approve me the first time without having to go through too much trouble

  • Sarah Hackley moderator author
    2 years ago

    I’m so glad you were approved! Thank you for sharing with us. I hope your success gives hope to some other people who are still struggling to get approval.

  • grammayumyum
    2 years ago

    In applying for disability, they want proof that you can no longer work even 33-50% of the time. Also, they deny the majority of applications in the first round. Appeal, appeal, appeal. I appealed every denial I received. The week before my last appeal was supposed to go to administrative law hearing with a judge, the judge called me. He had been reviewing my case, and had no idea why I had ever been denied. He said my case was black-and-white and should have been approved with the first application. He approved disabilty without a hearing. It took two years. And yes, filling out every one of those forms was like being assaulted, because I had to relive every single thing that had been taken away from my health, my family, my work, my community life, etc…

  • Hottiepants33
    7 months ago

    They review mine every three years. I panic the second I see the envelope in the mailbox and you have to do it multiple times and it is terrible. I’m so sorry you had to do this for two years.

  • Sarah Hackley moderator author
    2 years ago

    Congrats on your approval! That’s wonderful news!

  • Msmmain
    2 years ago

    I’ve had chronic migraines for the last 10 years: 4-7 days/week in bedridden, and I applied for disability twice in that time, and I was declined both times. The first time was about 6 years ago and they basically said “migraines are not debilitating and youre too young to need it (I was 25 or so)”; the second time was 3 years ago and they again essentially told me: “migraines are not debilitating and you are able to work full time while having them, Fuck off”. Ive been afraid to apply since then. Every application is heart wrenching and the denials are like being stabbed in the gut. I’m afraid to go through it again, and yet I’m barely getting by on temp work & by selling stuff online (my own as well as other people’s for a commission). The only reason I have anywhere to live is because of my boyfriend but not being able to pay 50% of everything is hurting us too. I’m between neurologists so I don’t even know what documentation I can provide. :'( I’m overwhelmed and I feel like its hopeless to try for disability again…

  • Sarah Hackley moderator author
    2 years ago

    I understand your frustration. Obtaining benefits can be a long, hard battle. Many times, however, if you’re persistent, you will get approved eventually. Maybe this article can help with a next step: https://migraine.com/blog/10-things-you-should-know-about-chronic-migraines-and-applying-for-social-security-disability/. Good luck!

  • Macbeck
    2 years ago

    THANK YOU!! It’s just one of those things, you know you’re not alone, but nice to have that verification sometimes. I’ve been officially disabled for nearly 2 1/2 years now, and yes, sometimes people still say “I hope you get better soon.”

    I won my disability in 3 months because I am a “retired” nurse, and knew that documentation was key – I took in daily documentation of symptoms, treatments & impact for nearly a year when I applied. I didn’t even have to see another doctor, and had to wait for my payments to start. Though I really should have stopped working a year sooner than I did.

    It is incredibly difficult to reach the point of acceptance that we truly must stop working to best care for ourselves. Thank you again to Migraine.com for your continued support.

  • Sarah Hackley moderator author
    2 years ago

    Congratulations on winning your case; documentation is definitely key!

  • Sheri Z
    6 years ago

    Red2,
    I’m so sorry you having to go through the pain of daily migraines and that you’ve been denied SSDI. I’m one of the rare migrainers that was approved for SSDI within 2 months. I am by no way an expert but I did take the advice of those on this site, especially Diana Lee, and completed the questionnaire based on the inability to work due to migraine disease rather than focusing on the pain. Something I didn’t expect when completing the paperwork was how emotional and depressing it would be completing the forms. When you put pen to paper and document all the ways that migraine disease effects your life it is very sobering. Those of us who have migraine disease realize how disabling it is. I pray that you find some relief soon.

  • red2babe
    6 years ago

    I 100% agree that it is a disability and I fight it more often then I want to admit, even on my daily medicines. But why when I applied for disability and SSI did I get denied? What more do I need to do? I need help. I have brain lesions on my frontal lobe along with the chronic migraines and without the daily medicines I can not leave my dark bedroom at all, on the medicines I can almost be human until I do have a migraine, then when I have one it can last for a few hours or up to days. And my employer does not understand, she says she has migraines too while at work but I don’t see how. She has lowered my hours the following week just because I have called in before. I have to work, we need both incomes to be able to pay bills in our family. I have had this medical problem since 2005, when the migraines and brain lesions were first found then too, since then every MRI shows more lesions. No answers either, no health insurance yet either. So I am stuck.

  • Diana-Lee
    6 years ago

    According to the 2010 Global Burden of Disease Survey, Migraine is actually considered the 7th most disabling condition globally.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3606966/

  • John Benjamin
    6 years ago

    Only those people who had not experienced the restrictive nature of migraine would not perceive it as a disability. The notion of finding what helps,your own list of a developed self management as mentioned is important.

    Take care, hope you have a less painful day.

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